This is my first time posting, but this forum has been truly invaluable to me over the last few months, so thanks to everyone here.
I’m 24 and so had my first ever smear test in April of this year. A month later I received a call from a nurse booking me in for a colposcopy visit as my results showed as HPV positive and CIN3. Post-colposcopy biopsies I was told I had Adenocarcinoma In Situ and CGIN, and so was referred for a cone biopsy scheduled for one month later. I was told to expect results 4-6 weeks later, and here I am 4 weeks later having received the most vague letter so far!
The letter reads “Further to your recent Colposcopy clinic visit, we will discuss your case at our next MDT to ensure the best plan of care for you. Following the meeting/discussion one of our team will contact you with the outcome”
I found the wording of the letter quite scary, and so called the colposcopy unit but they just told me that they can’t share any info before the MDT (which happens once a month, but they couldn’t tell me how long until the next one, so how long I might be waiting).
I was hoping others might be able to share their experiences of what this meant for them if you have received a similar letter? I might be overthinking, but I was honestly assuming that my results post cone-biopsy would just arrive in a letter saying either ‘you’re all good’ or ‘not all good’, basically, so didn’t foresee this further delay.
Is this something that happens for everyones cases?
I’m in a similar situation with waiting for MDT. I had a colposcopy in June for low grade changes and had a biopsy taken. Got a really vague letter like yours 3 weeks later about taking results to MDT. When I called the nurse said she couldn’t tell me over the phone. MDT was 13th July and it’s been 8 weeks since my biopsy. The not knowing and waiting is torture!! I have learned that most cases go to MDT if there is a discrepancy between smear and biopsy or in your case after treatment if they are unsure if they have gotten clear margins. Also for CGIN they always get referred to MDT because management is more difficult. I hope that helps I feel your waiting pain!!
Thanks for replying, it’s definitely useful to know about CGIN always being referred to MDT…
I hope you get your results soon too - do you have an appointment date from them yet for the consultation?
Sometimes I wish they’d stop with the vague place-holding letters so I could continue living in my (temporary and fragile) blissful ignorance without all this overthinking!!
For AIS or CGIN, there are slightly more aggressive treatment protocols to CIN.
They need to ensure all abnormal cells are completely removed. If the margins of your biopsy/cone showed abnormal cells, they will call you back for additional treatment.
This is what happened to me, I had a lletz in Dec 2020 and a repeat lletz in Jan 2021 as the margins were not clear in the first lletz.
My consultant said that if I had just CIN he would not have done the second lletz and would have just done a watch and wait approach.
My first results were also discussed at MDT, my feeling was that more professional head together means a better & more thorough treatment protocol for me.
Luckily my second lletz came back clear and I had my 6 month follow up test in July.
I agree with these vague letters we receive in UK/IE, it causes more anxiety for us. In South Africa I used to receive the actual pathology report and a call from the doctor within a week of my sample.
No worries I feel like most people who’ve been in our situation have been told over the phone so it’s unfortunate neither mine or your hospital will do that for us. Also I COMPLETELY agree re scrapping the vague holding letters…. It’s done absolutely nothing but cause me stress I’d have rather not known anything until after the MDT and live in ignorant bliss like you said! I haven’t got any appointment no, the consultant seemed confident I wouldn’t need treatment and was so nonchalant. So now I’m presuming it’s worse than he thought which is so stressful. Yeah definitely CGIN goes to MDT as standard so it may well just be that for you. I hope you hear soon, my hospital has their meeting once a month too but at least they told me when it was! I can’t believe they won’t even tell you when it is!!
